sphn at a glance june, 20182 the scientific expert board (seb) is a scientific advisory group to the...

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1 The Swiss Personalized Health Network (SPHN) is a national initiative designed to promote the development of personalized medicine and personalized health in Switzerland. SPHN will create a dynamic network of existing data sour- ces and will thus fund the efforts that are needed to make existing databases nationwide interoperable. The ultimate goal is to prevent, diagnose and treat unfavourable health conditions more precisely, thus reducing the risk of de- veloping such conditions and permitting more effective treatments of disease states with fewer adverse effects. The Swiss Academy of Medical Sciences (SAMS) was mandated by the State Secretariat for Educa- tion, Research, and Innovation (SERI) and by the Federal Office of Public Health (FOPH) to develop a Swiss Personalized Health Network (SPHN). During the period 2017–2020, priority is given to the development of a nationally coordinated data infrastructure ensuring data interoperability of local and regional information systems with special emphasis on clinical data management systems en- abling effective exchange of patient data (e.g. disease phenotypes). In the long-term, public health and healthy citizen data will also be integrated. Overall, a national coordinated data infrastructure will optimize the use of health data for personalized health related research. SPHN integrates relevant clinical and basic research institutions and research support organizations The SPHN project organization involves partners at the national level, at the technical level, and at the institutional level (Figure 1). SAMS is the overarching body of the project. The National Steering Board (NSB) is the highest governing body of SPHN and is responsible for the overall strategy, for maintaining regular contacts to the superordinate political authorities and for external communications in coordination with SAMS. It includes representatives from key insti- tutions in Switzerland (e.g. University Hospitals, Universities, ETH-Domain, swissuniversities, FOPH, SNSF). The integration of representatives from additional institutions (e.g. private hospitals, health insurances, industry) is foreseen in the future. The members of the NSB are appointed by SAMS. The NSB Ausschuss (AS) has the duty to prepare the meetings of the NSB and meets regularly to advance activities, process information, and enable more effective management of the SPHN as a whole. It is composed of the heads of the SPHN bodies. Swiss Personalized Health Network SPHN SPHN at a Glance June, 2018 Please note that the relevant documents mentioned in this factsheet (e. g. Funding Principles, Funding Regulations) are published on the SAMS website and on the SPHN website.

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Page 1: SPHN at a Glance June, 20182 The Scientific Expert Board (SEB) is a scientific advisory group to the NSB and comprises experts from a variety of disciplines. The Data Coordination

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The Swiss Personalized Health Network (SPHN) is a national initiative designed to promote the development of personalized medicine and personalized health in Switzerland. SPHN will create a dynamic network of existing data sour-ces and will thus fund the efforts that are needed to make existing databases nationwide interoperable. The ultimate goal is to prevent, diagnose and treat unfavourable health conditions more precisely, thus reducing the risk of de-veloping such conditions and permitting more effective treatments of disease states with fewer adverse effects.

The Swiss Academy of Medical Sciences (SAMS) was mandated by the State Secretariat for Educa-tion, Research, and Innovation (SERI) and by the Federal Office of Public Health (FOPH) to develop a Swiss Personalized Health Network (SPHN). During the period 2017–2020, priority is given to the development of a nationally coordinated data infrastructure ensuring data interoperability of local and regional information systems with special emphasis on clinical data management systems en-abling effective exchange of patient data (e.g. disease phenotypes). In the long-term, public health and healthy citizen data will also be integrated. Overall, a national coordinated data infrastructure will optimize the use of health data for personalized health related research.

SPHN integrates relevant clinical and basic research institutions and research support organizations

The SPHN project organization involves partners at the national level, at the technical level, and at the institutional level (Figure 1). SAMS is the overarching body of the project.

The National Steering Board (NSB) is the highest governing body of SPHN and is responsible for the overall strategy, for maintaining regular contacts to the superordinate political authorities and for external communications in coordination with SAMS. It includes representatives from key insti-tutions in Switzerland (e.g. University Hospitals, Universities, ETH-Domain, swissuniversities, FOPH, SNSF). The integration of representatives from additional institutions (e.g. private hospitals, health insurances, industry) is foreseen in the future. The members of the NSB are appointed by SAMS.

The NSB Ausschuss (AS) has the duty to prepare the meetings of the NSB and meets regularly to advance activities, process information, and enable more effective management of the SPHN as a whole. It is composed of the heads of the SPHN bodies.

Swiss Personalized Health NetworkSPHN

SPHN at a Glance June, 2018

Please note that the relevant documents mentioned in this factsheet (e. g. Funding Principles, Funding Regulations) are published on the SAMS website and on the SPHN website.

Page 2: SPHN at a Glance June, 20182 The Scientific Expert Board (SEB) is a scientific advisory group to the NSB and comprises experts from a variety of disciplines. The Data Coordination

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The Scientific Expert Board (SEB) is a scientific advisory group to the NSB and comprises experts from a variety of disciplines.

The Data Coordination Center (DCC) is managed by SIB and is responsible for the definition of common technical data standards, harmonization of semantics, data storage formats, data security, data management and quality control. The DCC closely collaborates with university and hospital IT departments, biobanks, and the registries of existing and new cohorts. In essence, the DCC drives the interoperability of the various clinical and -omics data.

The ELSI advisory group (ELSIag) addresses ethical, legal and social challenges that SPHN will face. It is composed of experts from various relevant fields such as bioethics, life sciences law and social sciences. It also includes representatives of SAMS, swissethics, and patient advocacy groups.

The International Advisory Board (IAB) is composed of international experts. The board provides advice, expertise, and peer–review of funding proposals and of the initiative as a whole.

Finally, the Management Office (MO) is operated by SAMS and is in charge of the administrative and daily operation of the initiative such as preparation of the meetings of the various boards, con-trolling, budgeting and reporting.

Figure 1: SPHN organization chart

SPHN starts with public institutions (e.g. University Hospitals, Universities, ETH-Domain) and shall be extended later to private hospitals and private companies.

mandates

operates

appoints

Technical level

National level

Institutional level

Personalized Health Platforms

– Biomedical platforms

– Private hospitals

– Private companies

– Universities/ETH, EPF

– University hospitals

– Public hospitals

– Public Health

Swiss BiobankingPlatform project

-omics data

Clinical data

Patient data

Citizen data

Inte

rope

rabi

lity

stan

dard

s

Biobanking, biomonitoring

related activities

SAMS

Management Office (MO)

InternationalAdvisory Board (IAB)

NationalSteering Board (NSB)

NSB AusschussResearch Projects

Data CoordinationCenter (DCC)

Data Expert Group (DEG)

BioMedITRI Network

ScientificExpert Board

(SEB)

SERI

SNSF

FOPHmandate

Ethical Legal Social Issues

(ELSIag)

Page 3: SPHN at a Glance June, 20182 The Scientific Expert Board (SEB) is a scientific advisory group to the NSB and comprises experts from a variety of disciplines. The Data Coordination

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The legal and organizational framework is defined by the SERI-SAMS service contract

SAMS and SERI have signed a service contract for the period 2017–2020. SAMS is thus the legal entity responsible for the good governance of the SPHN initiative. The service contract together with the Rules of Procedure, the Funding Principles, and the Funding Regulations define the overall framework of the initiative.

On this basis, the Swiss Government has allocated a total of CHF 68 million to the SPHN initiative for the first period 2017–2020 of which 50 million are under the responsibility of the NSB and SAMS. The remainder is dedicated to the BioMedIT project which is under the responsibility of SIB. The matching funds principle applies to all financial contributions, i.e. the participating institutions must provide their own contributions (in cash and/or in kind) to match the funds provided by SPHN.

Item CHF Description1. Management, bodies, symposia, workshops, etc 4.0 mio Limit of expenses (Ausgabenplafond)

2. Instruments 46.0 mio Total engagements (Verpflichtungskredit)Infrastructure implementation projectsInfrastructure development projects 'Driver' projects

3. BioMedIT 18.0 mio Limit of expenses (Ausgabenplafond)

SPHN funds the development of infrastructure via three instruments

Based on the Funding Principles and Funding Regulations, SPHN supports projects that fall into one of the following instruments.

Instrument Description Funding schemeInfrastructure implementation projects

Projects that are devoted to build a progressive shareable data system enabling nationwide interoperability of molecular and clinical patient data.

Collaboration Agreements

Infrastructure development projects

Projects that thrive to develop and test new technologies, methods and infrastructures for personalized health related research in connection with infrastructure implementation.

Call for proposals

'Driver' projects These projects are based in a concrete research field (e.g. oncology/ immunology) and will push the development of clinical data management systems in all University Hospitals by testing data interoperability & data sharing principles within the whole network.

Call for proposals

To take advantage of the entire ecosystem, the calls for proposals were coordinated with the ETH-Domain SFA PHRT program. The SNSF also supports projects in personalized health research through competitive calls across existing instruments (no ear-marked funding).

Information about projects supported by SPHN is available at: sphn.ch/en/projects.html

Page 4: SPHN at a Glance June, 20182 The Scientific Expert Board (SEB) is a scientific advisory group to the NSB and comprises experts from a variety of disciplines. The Data Coordination

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Swiss Personalized Health Network

Swiss Personalized Health Network Haus der Akademien | Laupenstrasse 7 | CH-3001 Bern T +41 31 306 92 95 | [email protected] | www.sphn.ch A project of:

Chur

Sion

Bern

Basel

Luzern

Lugano

Aarau Zürich

St. Gallen

Fribourg

Neuchâtel

Lausanne

Genève

SPHN starts with the University Hospitals, the Universities, the ETH-Domain.

SPHN shall be progressively extended to other public institutions.Private hospitals and private companies shall be included later.

Chur

Sion

Bern

Basel

Luzern

Lugano

Aarau Zürich

St. Gallen

Fribourg

Neuchâtel

Lausanne

Genève